Chronic Hope Part Two: The Raging Storm

photo of dark clouds
Photo by Andree Brennan on Pexels.com

As usual January 1st, 2017 came and went in the blink of an eye. In the first 2 months of switching to a whole foods plant based diet I felt wonderful. For starters the weight began to fall off even though we weren’t completely whole food plant based yet. What I mean by that is we transitioned from eating meat, heavily processed foods, oils, and added sugars to no meat or animal by-products, minimal sugar, limited oils, and processed vegan foods. Along with a change in our diet we added in vitamin b12.  After a month or so we weaned ourselves off of heavily processed foods and added sugars, and eventually stopped cooking with oils several months later until we were completely whole foods plant based compliant. I was so surprised that I felt like a new person so early in the transition! The brain fog lifted, fatigue lifted, ADHD improved, pelvic pain improved, GERD disappeared, blood pressure lowered, digestion and bowel movements became normal, periods weren’t as painful, and plenty of other symptoms that I know I’m forgetting improved.

It seemed as though everything was falling into place. I was feeling better than ever and losing weight without restricting the amount of whole foods I was eating with little to no exercise. Admittedly, exercise was still a challenge and I was looking for ways to be more active without stressing my body too much. All in all everything was great and I was grateful to God for leading us on this path to good health. At this point what could go wrong?

Apparently, a lot can go wrong. The last week in February I experienced severe pain on the left side of my pelvis followed by a rush of bright blood. It was a scary experience because I also felt a lot of low back pain and fatigue as well. I immediately called my nurse practitioner and was scheduled to see her on Friday of that week, which ended up being March 3rd. When I saw her that Friday, she performed a pelvic exam and an ultrasound on my left ovary since that’s where I felt the pain. The ultrasound looked normal and she suspected that a cyst had formed on my ovary and burst. It was interesting to learn that a lot of women get cysts in their lifetime and never know it while others will feel pain and discomfort with cysts. Obviously, it all depends on what type of cyst is growing on the ovary but she suspected it was benign. I didn’t feel comfortable with the fact that nothing was seen on the ultrasound and that she was assuming that this pain came from a ruptured cyst. At that time I didn’t really question doctors and had not learned to properly advocate for myself. Unfortunately, I didn’t ask any follow up questions and went home; I had a very uneasy feeling about it all. I couldn’t shake the feeling in my chest along with the thought that this might be endometriosis. I tried to shove down this thought and ignore my instincts because at that point I couldn’t control what might happen and decided to not worry about it. I told myself maybe I was just overthinking and considering the worst possible scenario.  I prayed to God asking him to let this pain be nothing serious. I hoped this was just a fleeting moment that would not repeat itself, despite the pounding sensation in my chest that was telling me to prepare myself for war.

The prudent see danger and take refuge, but the simple keep going and pay the penalty. Proverbs 22:3

I didn’t want to listen to the Holy Spirit in that moment, so I dismissed the feeling as an evil foreboding. Of course now I know for sure this was a missed opportunity to prepare myself for the impending war on my mind, body, and spirit that came like a raging storm into our lives.

Finally, be strong in the Lord and in the strength of his might. Put on the whole armor of God, that you may be able to stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand firm. Stand therefore, having fastened on the belt of truth, and having put on the breastplate of righteousness, and, as shoes for your feet, having put on the readiness given by the gospel of peace. In all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one; and take the helmet of salvation, and the sword of the Spirit, which is the word of God, praying at all times in the Spirit, with all prayer and supplication. Ephesians 6:10-18

The truth is, neither of us were prepared for what was about to happen. I realize it’s easier to look back now and see how naive and ill equipped we were to spiritually deal with any major unexpected health issues. It’s important to share my refusal to listen to the Holy Spirit’s warnings because it is so easy for anyone to do this. It’s especially easy to dismiss something you really don’t want to hear out of fear. When I allowed fear to control me in that moment and refused to prepare myself by reading scripture and seeking God in that way, I loosened my armor. I made a vulnerable space penetrable for fear, doubt, and all their friends to attack me. It’s that weak link in the armor God provides to us that could hold us down when the storm approaches. We don’t want to see that we are the actual cause of our faulty armor so we tell ourselves that God isn’t protecting us in our time of need. Indeed God was supplying me with the armor to fight this spiritual battle but it was me who failed to use it correctly. It’s easy to share times I’ve heard God and responded appropriately but it’s tough to share the times when I didn’t listen. Sometimes in hearing and trusting God we have to learn things the hard way, and I am no exception. It’s in these hard life lessons that we see the error of our ways and hopefully do not repeat the same mistakes. When the storm came upon us and the battle began, I didn’t have on the full armor of God. I had my belt of truth on, my shoes of the Gospel of Peace on, my breastplate of righteousness on, my shield of faith lifted, and my helmet of salvation on; I had left the sword of the spirit behind, which is the word of God. Can you imagine getting on the battlefield and not having your sword to slay the enemy with? Trust me, it’s not pretty. I know I’m not the only Christian to have made this mistake and I share this to encourage those that have to keep pressing on to find your sword during the battle. Maybe instead for example you find that you’ve lowered your shield of faith and think reading scripture will provide enough protection; recognize your sword of the spirit can’t save you from the flaming arrows like your shield of faith can.

We have to stay vigilant in making sure we use our spiritual armor correctly and make repairs to any cracks in our foundational beliefs in peace time. Otherwise, you’ll find yourself lacking the appropriate protection when the enemy attacks and it will become an uphill battle in a storm.

As I mentioned earlier, I dismissed the bad gut feeling and I went about my usual routine and was excited that March had finally come. Both of our birthdays are in March and it’s a fun time when plants and flowers come to life. The weekend came and went quickly as usual and I was scheduled to work the following week in the mornings. I was excited because I usually only worked on weekends but was filling in since my boss was not working that week. Little did I know I would only work two days out of the six that I was scheduled to work.

When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.  Isaiah 43:2

I remember it like it was yesterday, it was 11pm on a Monday and I had worked that morning. The pain started from my right ovary moving to the left all the way to my back muscles. Almost like someone had wrapped my lower abdomen with a scarf of molten hot lava. No exaggeration, it straight up felt like lava. The back pain went all the way up to my kidneys. I tried to ignore it but I could barely breathe. I prayed and prayed for God to take the pain away. I took some ibuprofen and in a couple of hours the pain went away. I thought, well I’m glad that’s over. I wasn’t interested in going to the doctor because I dislike doctors appointments and ER visits. I pretty much need to feel like I’m dying in order to consider going to the ER so I was satisfied that the pain went away.  I went to work the next day and in a matter of hours the pain had returned, worse than before. One of the veterinarians I worked with told me to go to the doctor because my face had turned gray. I was trying to push through the pain but I knew I needed to go home. On my way out I quickly realized that I had started bleeding as if I wasn’t on birth control which was perplexing to say the least. In addition to the mind numbing pain and excessive bleeding, the nausea was so bad I could barely drive home. I was urinating every 30 minutes and understood that whatever was happening was upsetting my bladder. I tried so hard to get in with my doctor and OBGYN but they were both completely booked. I decided to go to the walk in clinic that my doctor’s office offers in order to get to the bottom of all of this pain.

I was so relieved when Micah came home to take me to the walk in clinic because I couldn’t drive at this point. I couldn’t think straight and was becoming more and more scared of what could be causing this amount of pain. When we got to the walk in clinic it took about 2 to 3 hours to be seen. Walk in clinics are a hit and miss but it was flu season and everyone was sick with the flu. When I finally was taken back the nurse began immediately questioning my pain. I had requested a urinalysis to rule out kidney issues since I have IC and could have some sort of an infection. She looked at me and said that I wasn’t in enough pain to have a kidney infection or kidney stones. Right, because you can look at someone and tell if they have an infection or kidney stones right? Talk about practicing outside of your scope. The entire visit this nurse was diminishing my pain, telling the doctor that I was not in as much pain as I claimed and then shared with me that she also works at the urology office I go to with other IC patients. It was hard for me to think straight but I told myself to remember her name and that she worked at both places. The doctor looked at me and said, “Well you are just experiencing period cramps.” I said, “Excuse me, I have never experienced cramps like this widespread pain. I can barely think, speak, or form sentences with this pain. What could possibly be causing cramps of this magnitude that wrap around my entire lower abdomen and back and lead up to my kidneys?” She replied, “Well you have back muscles.”

Really? That’s the best you could come up with? Back muscles? Child please! I explained that this pain is not normal and that I am going to go to the ER since they refuse to take my kidney pain and lower abdomen pain seriously. Kidney stones run in my family and I wanted a CT to rule out anything serious. When they realized I was not there for drugs, that I wanted to find the cause of my pain, and that I wasn’t going to be pushed around they changed their tune real quick. She told me she would tell the ER I was coming and send an order for a CT. That nurse told me on our way out that I didn’t have anything wrong with me, that she has seen kidney stones before, and I don’t look like I have that much pain.

Noted.

If there is anything most people know about me it’s that I am not someone you want to attempt to gaslight. In short, gaslighting is where someone tries to manipulate another by psychological means into questioning their own sanity. Because I grew up in dysfunction I am keenly aware of covert manipulators and their tactics, including gaslighting. I guess I should be thanking God for those experiences in preparation for this, huh? Anyway, she made a mistake trying to gaslight me when I was at my weakest and I’m sure I’m not the first one she has done this to before. In the medical setting this is a very common experience by people who have invisible illnesses. Women especially are accused of making up the pain “all in their head” and are often dismissed without a proper diagnosis for years. The least I could do at that point was report her behavior. I’ll be sure to let the NC board of nursing know that there is a nurse practicing outside of her scope at two different locations in NC. Good luck with that honey, from what I hear you’re going to need it.

I was shocked by both the nurse and doctor’s minimization of my pain and dismissive attitudes. I knew that to be taken seriously I was going to need to stop hiding how painful this really was for me. I had become used to hiding my pain so well over the years that unless you knew me, there wasn’t a lot of indication that I was in a lot of pain at first glance.  When we arrived at the ER the wait was not surprising since it was flu season. When I was finally seen, they tested my urine, sent me down for a CT, and ran blood work but nothing was found. Do you know how scary that is? You know something isn’t right but there are no tests to prove it. Your insides feel like hot lava but nothing shows up on any imaging or blood work and it’s terrifying. The only thing that helped the pain was the drug dilaudid. Dilauded took my pain down from a 10 to a 4. That’s how you know the pain is severe, it didn’t get better than a 4. The ER doctor was very sweet and although he did not have answers about what was causing the pain, he gave me a prescription for pain meds and an antibiotic in case the tests were wrong and I did have a kidney infection. We felt okay with that since the tests weren’t showing anything serious. At least whatever was causing this issue was not killing me. I felt deep in my spirit that this was a reproductive issue since I had started bleeding non-stop from the moment all this pain started while on birth control. I was not supposed to have a period for another 2 months but no one seemed concerned about that fact at the time. I tried to explain that I had experienced the pain from a suspected burst cyst last week that was very similar but they brushed it off and acted like I was foolish for mentioning it. The medical staff kept alluding to IC being the culprit and I knew if I was going to get to the bottom of this issue, I needed to have my urologist rule out IC before I took it to my OBGYN. They released me at 5am or 6am and all I wanted to do was crawl into bed and rest.

After we got home and slept, I had some phone calls to make. The first one was to let my boss know I would not be able to work for the remainder of the week. They were so understanding and accommodating and I am still grateful to this day for their empathy and compassion. The second phone call was to both of my doctor’s offices to file a report on that nurse and doctor. When the manager heard my story, she immediately apologized and told me this was not the first complaint she had heard regarding this nurse. When I used phrases like “practicing outside of her scope”, ears perked up and the legality of it all started to wash over her voice. She knew I had good reason to report this nurse and was quick to respond with empathy. Additionally, the doctor didn’t even perform a physical exam before dismissing my pain, in fact she didn’t perform a physical exam at all; these are serious issues worth reporting. I’m not even sure how I kept my thoughts together during those phone calls after being in excruciating pain for 12 hours, limited rest, and being doped up on pain meds. Maybe it was adrenaline, maybe it was Jesus, who can say for sure?  Let’s get real, it was probably Jesus.

After dealing with the issue of reporting the nurse and doctor, I went on to set up an appointment with my urologist to rule out IC but couldn’t get in until the following week. I rested and prayed for answers to be given to us. What was happening to my body? What could mysteriously be causing this pain? I had a suspected cyst rupture on my ovary the week before; could this be part of what was causing this pain? Was this all connected somehow? How could it not be connected to the “ruptured cyst” from last week? I had to stop my thoughts because it was too much to think about and I needed rest. In an effort to rest, I turned on the golden girls and finally went to sleep.

I thought it was all finished after that first ER visit but alas, that was only the beginning. A couple of days later the pain returned but this time, the pain meds were not touching it. Back to the ER we went where a female doctor thought to do a pelvic exam, rechecked my labs, and performed two different vaginal ultrasounds. Again, nothing showed up, but she was headed in the right direction. She was the only doctor to think to do a pelvic exam and ultrasounds. The issue is that this was now my second time coming in and again, nothing was found. The staff looked at me as if I was a drug seeker. It helped to have Micah and my mom there with me. Often women are dismissed by doctors when they have pain and when a male is present and vouches for them they are often believed more times than not. In this case I had two people who could vouch for me, the more the merrier. I wish this wasn’t true but it is, this is a huge issue in healthcare and I am certainly not the first or last person to experience this type of treatment. After about an hour waiting for the ER doctor to return, she sent her PA in to tell us they didn’t know what was wrong. I asked him what could cause pain like this and he threw his hands up in the air and said I don’t know. It was dismissive and suggested that they suspected I was making up the pain. I could feel the tears welling up in my eyes as he left the room; all this pain and still no answers. In that moment I’d had enough and realized that I was going to have to figure this out without their help.  Again, dilaudid took the pain down to a 4 from a 10 and I was sent home with no answers and mounting medical debt in the process. At this point I became more convinced that this was a reproductive issue and just needed to make it to my appointment with the urologist the following week. Whatever this illness or disease was, it was causing excruciating pain, didn’t show up on blood work or imaging, and was causing the IC to flare.  I prayed for God to allow me to make it to the urology appointment. I was so tired, could barely get out of bed, and could not think clearly enough to figure out what was happening. I began reading scripture that gave me some comfort and a gentle reminder that I wasn’t alone in this.

Have I not commanded you? Be strong and courageous! Do not be terrified or dismayed (intimidated), for the Lord your God is with you wherever you go.” Joshua 1:9

I found comfort with this scripture and realized I understood it from a whole new perspective at that moment. Before this illusive pain confined me to the bed, I had read Joshua 1:9 in a different light. It really wasn’t until I was bedridden, experiencing great difficulty to walk, hover, or crawl around the house that I became aware of how consuming fear can be when we are weak and vulnerable. I didn’t want to let the fear consume me, so I took this scripture to heart and let go of my need to control the situation. Whatever was going to happen to me was going to happen regardless of how fearful I was; I might as well trust that God is allowing this to happen to me for a reason. Please understand that when we feel fear it doesn’t mean we don’t have faith in God. Emotions can be misleading and are fleeting in the moment. It’s critical to recognize the spirit of fear as a spiritual attack and we need to fight it off at its onset with the weapons of the spirit. The weapons of the spirit are studying the word of God, praying in the spirit, worship or praise, giving, and serving. My weapons of choice at that time for the rush of anxiety and fear of the unknown were studying the word of God and prayer. I believe that speaking scripture out loud has a lot of power and would confess scripture out loud against anxiety and fear.

Although my health felt stable after that second ER visit, a few days later I experienced severe chest pressure and pain that sent me back to the ER. Okay God, here we go again. I almost didn’t go to the ER because I didn’t feel like this was a heart attack or cardiac event. However after speaking with my sister who is a nurse, I decided to get checked out anyway since this painful pressure was intense. I had chest x-rays done, an EKG, and blood work; again nothing showed up on any tests. At this point we didn’t know what to do. The only thing we could do was pray and that’s what we did. Fear was beginning to consume me, I could feel it despite my previous attempts to ward it off. I could feel the anxiety building in anticipation of the pain and fear of the unknown. Again, I continued to read scriptures to calm my nerves and kill the anxiety. I found Psalm 91:4 to be a good reminder to protect my mind and thoughts from the looming darkness that seemed to be surrounding us.

He will cover you and completely protect you with His wings, and under His wings you will find refuge; His faithfulness is a shield and a wall. Psalm 91:4

It hit me like a ton of bricks that the storm was here at our doorsteps and there was no going back to the ease of last week; peacetime was over. What is sometimes hard for people who have not experienced chronic pain before is to understand there is a mental battle that goes along with the physical battle. It isn’t just forcing yourself to crawl down the hall in excruciating pain to get something to drink; it’s the mental battle telling yourself to make it to the next second, to not give up hope, to not lose faith, and to not let fear control you through it all. The battle is all encompassing and if you’re not spiritually prepared for it, it’s an uphill fight in the storm. Everything happened so quickly that we could barely catch our breaths before the next wave of attacks began. We weren’t spiritually ready for this and took quite a beating when it all kicked off. As I shared earlier, it’s a tough lessen in listening to the Holy Spirit because I felt the nudge to spiritually prepare myself before this happened and I thought I had more time. It is one of the best lies we tell ourselves, that we’ll have more time tomorrow. That is precisely when I let pride and fear control me, it’s a lesson I haven’t forgotten since all of this began.

After three ER visits, lots of praying, praise, and reading scripture, we FINALLY made it to the urology appointment the following week; it happened to be on my birthday, oh what fun I had in store for me that day. After a thorough pelvic exam, my urologist felt this was a gynecological issue and sent me directly to my nurse practitioner to be worked in immediately. After listening to my story and doing a thorough pelvic exam, she told me she felt this was endometriosis and set up an appointment with the surgeon she worked under. Let it be known that I was heard by both my urologist and my nurse practitioner, my pain was real. I cannot thank them enough; it is not a small thing that they believed my pain was real. That 29th birthday was the worst birthday I’ve ever had; two pelvic exams in one day to find out that I might have a reproductive disease that could prevent us from starting a family and may never go away.

It was rough. We spent the next week praying for Jesus to heal me, divine wisdom to be given to the doctor I was scheduled to see, and for peace and rest in the meantime. At that point all we could do was take it one moment at a time. There would be no thoughts questioning what tomorrow or the next day would bring; just thoughts on making it from one second to the next. For me, it was too much to consider the “what ifs”, so only a select few people knew what was happening to us at that time.  I couldn’t answer the scary questions that might be asked by well-meaning individuals, so I limited who knew.

That week flew by and suddenly we found ourselves waiting to see the surgeon. When we met with the OBGYN he explained that there are two ways we could investigate if endometriosis was present: either he performs a laparoscopy to see if endo is present or he can give me a drug called Lupron that will temporarily induce a menopausal like state. The caveat with the surgery is he may not be able to see the disease if it is present. He referred to this type of endo as ‘microscopic” and barely noticeable. The caveat with Lupron is we would be guessing whether or not I really have endo and wouldn’t know unless my symptoms got better in addition to temporarily shutting down my ovaries and inducing a menopausal state while taking the drug. Umm, I’ll pass on the drug, I want a definitive diagnosis. My doctor explained that endometriosis is most likely the result of misplaced endometrial tissue from the endometrium that lines the uterus during retrograde menstruation. Over 90% of women experience retrograde menstruation during their periods (back flow of menstrual blood back into the abdominal cavity); yet this theory suggests that those of us with endometriosis experience retrograde menstruation and that misplaced tissue transplants itself in the pelvic cavity randomly. Because I didn’t find any other theories when I googled endometriosis other than the theory of retrograde menstruation, I accepted this as truth at the time. I assumed my OBGYN was skilled enough to treat this disease because he treats a lot of women with endo. Surely, he knows best and I should trust his judgement right? (Please visit my post that goes into detail regarding these options and theories here if you’re currently weighing the pros and cons of surgery vs. Lupron or another hormonal treatment to treat or diagnose endometriosis.)

I followed my gut, I chose surgery. I could barely walk and was bed bound most of the day every day since the pain started; Micah had to help me take showers and I had to rest after bathing for the rest of the day. I wanted answers to what was holding me down. The fatigue, the bloating, the IC flares and the overall pain were all taking their toll on me. As the surgery was approaching, I prayed for answers. I felt the Holy Spirit tell me it was all going to be okay and I had so much peace.

My son, pay attention to my words and be willing to learn; Open your ears to my sayings. Do not let them escape from your sight; Keep them in the center of your heart. For they are life to those who find them, and healing and health to all their flesh. Proverbs 4:20-22

In the past the thought of surgery and a painful recovery would have stressed me out with anxiety. Honestly, I think because of those recent events, a diagnostic surgery was not scary to me. I really had a sense of calm from hearing from God. I was ready for answers and wanted a name for what was causing all of these symptoms. It was hard waiting for surgery because I was still in a lot of pain but it was in the waiting that I was able to process what had happened over those three weeks. It was in the waiting that I realized how much I was growing spiritually from all of this uncertainty. The fear of the unknown was actually pushing me closer to God, solidifying my faith in his promise of healing.

Sometimes it takes getting sick to humble you and remind you that no one gets out of this life alive. It’s a reminder of what is important and to put God first above everything else. God doesn’t cause us to get sick, but he does let it happen. We don’t always have answers as to why and I am no exception. I may never get all of the answers although some have been revealed to me over time. For some people, chronic illness has caused them to push away from God in anger; for others like me, chronic illnesses have brought us closer to God. It doesn’t mean I don’t have bad days or dark moments questioning if I can continue with the pain or fatigue. It just means that I understand God allowed these chronic illnesses to happen to me, I have accepted that this battle is part of my story, and I will not allow the darkness to overcome the light within me.

It’s hard to say for sure why some of us are more resilient than others. If you find yourself struggling to “feel” like believing in hope I’ll let you in on a secret: hope is a choice not a feeling. It’s easy to talk about hope when you aren’t in a flare and are pain free. However when you’re in the throes of an endo flare unable to eat due to nausea, barely able to walk and end up crawling down the hallway struggling to catch your breath because of the pain, the choice to hope becomes much harder. Regardless of how I felt in the moment I chose to hope for a cure, for a treatment or miraculous healing that would remove endo and IC from my body. The outlook was bleak as far as a cure, but God can move mountains if he wills it and if you choose to believe there is hope hold on to it for dear life. Be ready because the moment you choose hope over despair the enemy will come against you like never before.

Before I knew it, that week had come and gone and the surgery was scheduled for the next morning. That night Micah and I snuggled, prayed for healing, and demanded a name for this thing that had violently attacked me.  We didn’t know what tomorrow would bring but we had peace that God would see us through it all.

Chronic Hope Part Three Available Here.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.